Im Dawn and 42 years old. I have had bladder problems since the age of 12. Diagnosed with IC at 18, and several other diagnosis through the years OAB + Bacterial Cystitis. I have found diet, urethral/bladder stretches to be helpful in controlling my symptoms. There are many 'new' treatments now available.

I have been a member of COB for 16 years, 14 years as a local co-ordinator and 11 years as board moderator.

Thankyou for using this board and sharing your information and experiences, this really does make a difference.

My name is Michelle (someone beat me to Michelle as a user name!!). I'm 37 years old and have suffered with chronic bacterial cystitis for 6 years. No IC diagnosis as antibiotics keep the infections at bay and a cystoscopy etc 4 years ago all showed up as 'normal'.

I am determined to get to the bottom of this miserable illness! I am so pleased that the COB Foundation has opened up to include bacterial cystitis sufferers too - although I always found the ICSG just as helpful and friendly before

I don't have a positive diagnosis, but my problems started last April with a bad UTI - since then I've had constant bladder and kidney pain, with frequency and urgency as well. I think I have been getting recurring infections which have knocked my immune system and inflamed my bladder - I spent months on antibiotics, which I think knocked my immune system even more, and made it easier for the next infection to come along!

I've been improving for the past few months: I've been seeing an acupuncturist since September, who's helped a great deal, especially with the pain and frequency. I've also seen a nutritionist, who put me on a diet with lots of supplements, including large doses of vitamin C and cranberry tablets, which really helped make me stronger. I've also found washing with tea tree oil helps. I have to avoid spicy food, caffeine, sweet fizzy drinks and most alcohol (although I've found I can tolerate one glass of champagne!).

I haven't had a flare/attack since November. I've been off work since I got ill and hope to start back, part time at least, in February.

I first had cystitis when I was 4. I was only told I had recurring cystitis and then it stopped when I was 7. It started up again a year and a half ago and I'm 13 now.
I don't know what I have. I was given Tremethoprim antibiotics and the first time they worked and I was fine for about a week but the next time I was prescribed them they had no effect at all!
I don't have a problem with frequency apart from when I have an "attack" of cystitis which is a relief in a way! I only seem to be in pain during an attack which seems like BC but no bacteria is found in tests so that doesn't help.
I was wondering if there was anyone like me in this way? I don't think I have IC and I seem to have more symptoms of BC but that doesn't apply with the urine tests! any way I just thought I'd say hiya to everyone and introduce myself! bye x

I'm sorry to hear your problems started so young. It's good that you are being very proactive and getting things looked at. I believe it's quite unusual to experience repeated cystitis at such a young age - there may be a physical cause such as a 'kinked' urethra. Hopefully the doctors will get you sorted out ASAP. I have a permanent infection and live on antibiotics. The last urine test I had done showed up clear - but then I had been on antibiotics!! From chatting to other sufferers I think it's fairly safe to say that bacterial cystitis can be caused in some people by a tiny, undetectable amount of bacteria - we just have highly sensitive bladders!!

Don't worry about the cystoscopy - I had that and a urethral stretch done under GA 4 years ago. I won't lie and say it was pain free (it may have been the stretch and not the cystoscopy that caused my discomfort) but it was quite manageable and passed quite quickly. I would recommend a course of antibiotics afterwards though - I wasn't given any and so got an infection within a couple of days!!

Hope you get sorted out quickly! At least on this site you'll find a lot of helpful people who understand exactly what you are going through - unlike those often unsupportive GPs!!

I first had cystitis when I was 4. I was only told I had recurring cystitis and then it stopped when I was 7. It started up again a year and a half ago and I'm 13 now.
I don't know what I have. I was given Tremethoprim antibiotics and the first time they worked and I was fine for about a week but the next time I was prescribed them they had no effect at all!
I don't have a problem with frequency apart from when I have an "attack" of cystitis which is a relief in a way! I only seem to be in pain during an attack which seems like BC but no bacteria is found in tests so that doesn't help.
I was wondering if there was anyone like me in this way? I don't think I have IC and I seem to have more symptoms of BC but that doesn't apply with the urine tests! any way I just thought I'd say hiya to everyone and introduce myself! bye x

Hi Rosie,

I'm sorry to hear you're having problems, but it sounds like you're working hard to try and find help which is really important. I seem to have quite similar problems to you - all of my symptoms seem to point to bacterial cystitis, but no bacteria have been found! I know how frustrating it is when nothing can be found, and you don't know what to do - I seem to have tried everything!

It's great you've found this forum - I hope you find it useful. If you want to chat about anything feel free to email me. I hope you find some help.

I just saw your post on the IC forum - don't worry too much about what your doctors think. It can be hard when they can't find what's wrong, and it's easy to worry about what they're thinking, but at the end of the day they're there to help you. If you don't feel they're being sympathetic or can't help, you can always see another one. It's hard especially when you're feeling ill, but be strong! Good luck with the cystoscopy!

Hi,
My name is Jacky;i'm 35 and i have had chronic water problems for 6 years(since having a hysterectomy)I have not had a diagnosis yet but long term antibiotics have allowed me to get my life back on track.My cystoscopy test showed everything was normal and ic has been ruled out.I have had many urine test done but no bacteria is found,only blood.I have found this site very helpful and have appreciated messages from other sufferers(i used to think i was on my own with this dreadful illness)Thanx to Millie and Lilly i'm trying some of the things you suggested.I'll let you know how i get on.
cheers for now
Jacky
xxxx

Hi my name is Lindsay. I am 26 and a secondary school teacher in London. Where do I begin... Well I started suffering from cystitis when I was 17. I got an attack once a year and didn't think anything of it. Then in October last year I had a severe attack that lasted about 4 weeks. Doctor put me on antibiotics that did nothing and the tests came back negative for bateria. So the next time I got it I assumed the doctor couldn't help and suffered for over a week before I went to the Dr's. He gave me a different antibiotic that seemed to do the trick. But it keeps coming back! (Suffering an attack at the moment)I thought I'd figured out the source - I was on the contraceptive injection Depo Provera for 6 1/2 years. I came off as it made me a depressive pyscho. The put me on the mini pill which effectively did the same but in a much shorter time span. I checked the side effects of these medicines and one thing they can do is to irritate the smooth muscle lining of the bladder leading to cycstitis. HOwever I have been off the pill since Feb and off the injection for years and well past the time when the doctors say the effects should wear off. I am at a loss and at my wits end! I just want to be normal again!__________________Lollie
Cleverly disguised as a responsible adult!

[B][/B]Hi my name is Louisa Trinder I am 24 years old. Unlike most of you I am proud to say that I have a great Doctor and he has said to me that he has seen me in to much pain for to long and now he is going to sort my Bladder out as my Urologist is been a big pain in the back side, infact it took six months to get an appointment with my Urologist and then another three months to get an appointment to have the X-ray scand done and that was in March. I asked the Radiologist what would happen next and she said that I would get an appointment through to see my Urologist within the next two weeks and its now all most the end of July and it still has not come.

This same Doctor even diagnoised me with M:E also called Chronic Fatigue Syndrome and Post-Viral-Fatigue-Syndrome. Its the fact that I have had M:E for so long that it has buggered my Bladder up and made it shrink thats one thing that I have learnt from the stupid urologist anyway and on Friday my Doctor swapped me from one painkiller to three. At present I am now on 200mg slow release Tramadol AM and PM and then Dihydrocodeine 120mg AM and PM and then Zapain Capsules which contain 500mg of Paractomal and 30mg Codeine Phosphate and I can take these up to four times a day.

Hi!
I'm Emma and I'm so glad to read that you all have the same problems I'm having - it's such a relief to know that someone else understands.
I had attacks of cystitis in the past, but since December I have been experiencing them at least fortnightly and I am so sick of it! Luckily my doctor is now refering me to Urology, although I don't know when to expect to hear from them. Like some of you, my samples do not show any signs of infection, although antibacterials like Trimethoprim do help me feel better. Over-the-counter remedies seem only to work while I take them, and then back to square one when they finish.
I'm wondering how everyone else manages not to be depressed - I'm finding this affects every aspect of my life - I can't leave the house when I have an attack, it is really affecting my relationship with my boyfriend, I have to take so much time off work, and even my sleep is broken up. I'm so glad to have found this forum now!
Take care everyone,
Emma

I am just adding to my previous post. I went to the Doctors today and have now been given another new illness this time its Epilsepy and I am scared in case I start having different seziures to the ones that I am having now.

Hi, my name is Christine. I am 33 years old, married with three children. I was diagnosed as having IC 2002. Since then I have had a terrible time with kidney stones which cause bacterical cystitis all the time. I have always found the ICSG (now COB foundation) very helpful and supportive. I am awaiting PCNL now (removal of kidney stones through my back) as blasting the stones (lithotripsy)3 times and going up the ureter twice (ureteroscopies) have not worked! Best wishes, Christine x__________________Chrissy

Hi
I'm Catharine and have only had BC twice - second time is now and was much worse than the first case (although very mild compared to many on this website). However things are improving with the second course of antibiotics.

I would just like to thank COB members for all the information, points of view and useful advice posted on this website. It has helped me understand BC and relieve many of my worries.

Hi I'm Julia, I'm 48 years old and have suffered with bacterial cystitis on and off since I was in my late 20's - I never had it before I had my daughter when I was 24. It is always caused by intercourse and antibiotics had always cleared it until I started with my new (lovely) partner two years ago after 4 yrs without a partner. Since then attacks have got worse and it's hard to find an antibiotic that works. Things came to a head in August when I went back to my doctor who decided to send me for cancer checks since no infection showed in my urine yet her dipsticks were showing blood. Panic ensued as you might imagine. However I had all the tests (ivf x rays, blood and urine tests and a flexible cystoscopy) very quickly thank goodness and I was found to be retaining urine. So it is bacterial cystitis, it's just the tests were not picking it up. And the hospital tests showed no blood at all! However although I've had a dreadful panic I am now about to have further tests and possibly a stretch so really I am being dealt with a lot quicker than some people on this board.
The site and board have been invaluable.
love and best wishes to all
xx

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